[jeff605Participant]

Hallo , my name is Jeff, I am 75,, was diagnosed some 4 years ago, and have started treatment ( x1 trial, CDTa ) 6 months ago. Fortunately, I have experienced only comparatively minor side effects.However; the myeloma has damaged my spine, causing severe pain – 30mg Zomorph morning and evening to control it. The big effect this has had is to reduce my height from 6'1" to 5'9", which is causing me discomfort and digestion problems, among other things; on the plus side my short tee shirts now fit me!! I foresee this change may well cause further problems in the future, and would like some proactive action taken. There has been talk (is it a general thing that information has to be virtually prised out of the consultants?) of vertobroplasty, but I feel this would leave me with the problems I am experiencing now, but the procedure that would restore some height, a kyphoplasty, wasn't suggested, when I mentioned it I got what I felt was negative feedback. Has anyone had experience of this procedure, if so, was it difficult to arrange, and was it successful?
I find the uncertainty of the future quite unsettling, and the only way to deal with it is to assume everything will be ok, and am living my life to this rule, otherwise you just put your life on hold.So, as my doctor relative says " keep on trucking"!! Jeff

[meganjaneParticipant]

Hi Jeff,

My husband Phil has asked about kyphoplasty numerous times since he was diagnosed in May 2012 and has seen a specialist about it (a different doctor every time) at least four times but nothing has been done yet. We were told it may not restore the lost height but we were hopeful it would help with the constant pain. I think in Phil's case they may keep putting it off as although he does have pain quite often he has stopped taking any pain management medication so they do not classify the damage as too severe. The most recent doctor he saw seemed more inclined to recommend the procedure for him but Phil was told it might be too long now after the initial damage was done. It seems kyphoplasty only works if the tissue in/between(?) the vertebrae is still living, if the tissue is dead the kyphoplasty op will not help. Phil has now been for another MRI and needs to wait until January for his next appointment with this doctor to hear the outcome. He is trying to get an earlier appointment!

I am sorry this doesn't actually answer your question but I wanted you to know that you are not alone in struggling to get your doctors to consider this procedure.

Megan

[eveParticipant]

Hi Jeff

My husband has the same problem with damage to his back,gone from 6ft 1 to 5ft 8, this has changed slightly in 2 3/4 years he gained an inch,but with the back weak he now tends to walk with his spine bent,this is a men ex royal marine,who only new one way to stand!!!!

We have not even thought of any repair for his back,mainly because this disease has been relentless for nearly three years,he also has problems with his hip!!!,often for surgery to be successful ,you need to be off chemo,,so this is a none starter.
Hope this info helps,some times things are better left as they are rather than creating more problems.Eve

[BabsParticipant]

Hi Jeff,
I too have suffered the same as you with bone damage and am now 3 inches shorter, it only really effects me in restaurants when sometimes if the chairs are low I look like a small child requiring a booster seat, I then have to look for a higher chair to sit on or move to lower table,also at home I can no longer reach the tall kitchen cupboards, this does cause great amusement to my friends and family – there is a funny side to this dam myeloma!!!
I was told very early on they could operate but like you it would not increase my height and may help with the pain but no guarantee of this, I decided that myeloma in itself is enough to manage and did not see the point of having an operation so decided to just learn to live with the new me, I have also had some physio through my local hospice and Kings hospital after my transplant where they told me the importance of posture, it is not easy to see ourselves but the pain we suffer does make us stoop!!! I now walk with walking stick, use trolleys always in shops and wheelchair when required as cannot walk long distances.
I was offered pain management and eventually a one off course of radiotherapy to possibly help lower and in very
few cases take away the constant pain, I took this chance and luckily for me it worked and I am free of the constant unbearable pain, now I manage my everyday aches and pains with paracetamol and rest!!
By the way I am 55, I was diagnosed aged 53 in July 2011 and had stem cell transplant march 2012 and am currently in remission.
I hope this helps
Babs

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